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When Doctors Didn’t Tell Me How Serious Ehlers-Danlos Syndrome Really Is

key information

source: The Mighty

year: 2016

authors: Michelle Hardy


The day I received my diagnosis of Ehlers-Danlos syndrome, I probably breathed out the biggest sigh of relief of my life. After five years of going to specialist after specialist and hearing something along the lines of “hmmm that’s strange, but it doesn’t quite fit anything well” and “wow — those symptoms are so strange — you’re an enigma,” I just wanted some sort of concrete answer. I was hanging on by a thread and taking experimental medication after experimental medication. I was on several strange, doctor prescribed diets, and I had to test my blood and urine regularly to make sure my dangerous medications weren’t shutting down my crucial organs. But all of that seemed minuscule compared to my symptoms.

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